Below you will find a tool. According to this tweet, it’s an “outstanding tool to learn what really matters to patients (aka people)”. Me? I’m afraid I dislike it, in fact, I dislike it a lot. And it seems, I am awkward again, so this post explains why I do.

Before I tell you why I dislike the form, let me repeat again that I dislike this whole notion of telling you ‘what matters to me’. I have written about it before, and I still think such a question should never be asked.

Let’s consider the tool then. Here it is:

First of all, I never understand why forms like that (it’s really not this form only) are designed without much thought spared to the fact that someone might actually want to fill that out and ‘open’ themselves. And how much space they actually have. No, it’s actually not a quarter of the page for each question, it’s considerably less (no, I didn’t make the effort of calculating). And apparently, I’m supposed to tell about myself and my life and all that. Really? In this little box?

Moreover, interestingly, no one seems to care about my handwriting. My handwriting happens to be largish, so for me the space afforded me is really for a couple of shortish sentences. Does anyone think I can ‘tell you about my life’ in a couple of sentences? I don’t. Needless to say, I understand it’s my problem, but then I kinda hoped you would care a little bit. Obviously, you don’t encourage me to write on the back of the form, as that would mean you would have to turn the page over. It doesn’t bear thinking, does it?

Also, it’s interesting that my answers to all your questions should be given the same space. Why?! Has anyone actually given it any thought? Just asking. In my experience a ‘neat looking’ form is much more important than it contents, so, let me ask you directly. Are the lovely uniform boxes a result of an, for want of a better word, ‘intellectual’ decision or are they just meant to look neat? But I do appreciate that at least the boxes do not contain dotted lines. That tends to limit the space even more. Well done?

So, this is the design/materiality of the form done, at least the main thing, I think (I could actually write more). It might be a good thing to start with. But let’s come to the main thing – what the form says. The title says:

Tell us about your life.

Why, I thought? Why on earth would you like me to do that?! Yes, you will tell me later, I’m sure, but I will have written already. But the main issue is that you’re asking me to write. And this is actually a more important point than non-linguists seem to realise.

It’s important to understand that writing and speaking are very different activities and they should not be confused. For example, when you talk, unless is the talk is recorded, it disappears, when you write, your writing tends to stay. In other words, you need to make an effort to retain talk, you need to make an effort to lose writing. When I write, I know I can be reminded of it, it can be read by someone who is not the addressee, it can be used against me. We speak and write using different grammatical structures, we speak and talk for different purposes. Writing tends to be associated with more formality and institutions. Talking isn’t. All in all, it is unlikely, what I say to you and what I write to you will be similar.

But things get more serious. When you ask people to write, you assume that ‘we all’ can simply write, that adult literacy levels allow people to engage with the form easily and without a problem. In fact, I was told off for asking about literacy levels, apparently ‘great majority of British patients’ will complete this wonder of a form without batting an eyelid. But will they? Here is a report on US adult literacy levels. Perhaps around 50 per cent of US adults might have problems with completing the form without any difficulty, it is very likely that at least 18 per cent will. Here is a similar report on British adults.

I encourage all those who simply assume that ‘everybody’ can read and write, to question their assumptions. Not everybody is ‘like us’, not everybody can simply pick up a pen and ‘just write’.

It’s time to go to the nitty-gritty of the form. Despite the fact that it pretends to be very opening, I find it quite strange that in the instructions in actually tells me what I should think about. Yes, yes, I do know that it says ‘it may help you’, but, you know, when doctors tell me it ‘may help me’, I do know that it’s not merely a suggestion, it’s an instruction.

And so, I am ‘encouraged’ to think about ‘family and friends, your work, your neighbourhood, your finances, your faith, your emotions….’. Quite a lot, innit? The problem with such lists is that I always think about something else. How about talking about me, like me, not my family? How about talking about my weight? Is that permissible? I know, I know, of course, it is permissible. Except it’s not on the list, is it?

Now, before I continue, let me tell you a story. Quite a few years ago, I was told about a piece of narrative research in medicine in which the participants were asked to talk for five minutes. What if I wanted to talk only for 3, I asked? I would sit with the dictaphone in silence. Seriously. What if I wanted to talk for 8? Tough. Why 5 minutes? Apparently, it sounded about right. I hope you see where I’m going with it. Why can I mention only ONE non-medical thing (I would so much like to know what is ‘non-medical’ here) or ONE thing a doctor asks. What if I want to write about two? Tough?

The idea of encouraging a story is that I can tell you the story I want to tell you and not a story you want to hear. And, please, don’t tell me that this ONE thing I will write on your form will be the most important one. Such an assumption doesn’t deserve a serious answer.

OK. Enough said, sapienti sat. So, let me tell you what I ‘really’ think about the form. It can be summarised as follows. If you can’t handle me telling you ‘what matters to me’, have the courage to tell me that; if you can’t make the time to listen to me tell you about it, have the courage to tell me. But please, don’t give me the forms on which you will tell me what to write, in the space you afford me, without much reflection that I might not be a person like you. I really really might not be someone with Proustian ability to write, but also someone with a life narrative straight as a road in Arizona. To be honest, I would much rather doodle.

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4 Comments

You make excellent points (as usual). But I think it *is* a reasonable start at initiating open-text communications between practitioners and patients. Criticism such as yours might initiate improvements. Isn’t it the case that sometimes, good ideas/designs come out of others’ bad ones?

I think this would be an excellent form for patients to ask their doctors to fill in, in advance of consulting with them, and to ascertain if their sources of joy etc are a suitable match. I would certainly advise patients not to fill them in unless their doctor was prepared to do the same.